Life-Changing Events

by Bob Deaton

From the Editor: This article originally appeared in the fall edition of Expressions in Independence, the newsletter of the Nebraska Orientation Center for the Blind. Bob Deaton, an assistant director of the program, offers real insight into his adjustment to blindness. Here is what he says about losing his self-worth, his struggle to regain it, and his journey in coming to see himself, not as a broken person, but as a person with much to give:

I was twenty-two years old when an ophthalmologist told me that I had retinitis pigmentosa (RP). I was slowly going blind, and probably in another fifteen years or so I wouldn’t see at all. I knew that I had tunnel vision and couldn’t see well at night, but I had no idea that my vision was slowly changing for the worse. All at once my world changed and the future looked bleak and uncertain.

The year was 1972. I thought I was the only blind person or going-blind person in all of northern Wisconsin. What I thought I knew about blindness was frightening and disturbing. Blind people were helpless, unable to do anything for themselves; they certainly didn’t work. Blind people were to be pitied and taken care of. That’s how I thought others would come to regard me.

I look back on those times with considerable detachment now; it’s as if it happened to someone else. There was the feeling that everything was changed forever, my personal self-concept shattered. At first I dealt with it by not dealing with it. I could still read with the central vision I had, recognize faces, and get around pretty well, at least during the day. Most people didn’t realize I had problems seeing, or so I liked to think. Maybe the doctor was wrong. Maybe my vision wouldn’t get any worse. I could deal with that.

Before long reality intruded. Things that were once easy for me became more difficult. Traveling at night or in dark places provoked anxiety. Things looked blurry, particularly at a distance. Colors were not so bright. It was with great dismay that I finally gave my tennis racket away, realizing that I would never play the game again.

By the time I finished college and began working towards a graduate degree in social work, life seemed pointless. I was working toward a career with no confidence that I could make it work. I suppose I felt some anger with my situation. Maybe I considered medical solutions; I think that there was supposed to be some remarkable treatment for my kind of problem in Russia. What I clearly remember is sinking into a deep depression that settled in for the long haul.

I don’t believe anyone who has been spared chronic depression can know what it is like. The sense of powerlessness is pervasive, persistent, and relentless. Each day is as empty of purpose as the day before, and there is no reason to believe that things will get any better. I couldn’t concentrate on graduate school, dropped out, and went to work in a local factory. If you ever want to stop the world and get off for a while, try working on an assembly line. As long as you show up for work and do your job reasonably well, you don’t have to engage your mind much. That’s exactly what I wanted, but the depression continued. I was drifting with no destination in mind.

After a couple of years the oppressive, unchanging regularity of what had become my life proved too much for me, and my thoughts turned to suicide. It seems incredible to me now to think that I once had a suicide plan, but it’s true. For me that was the low point of my life. As I thought about how I would end it all, I scared myself badly enough to want to do something about it. Life was pretty bad and didn’t look much better down the road, but I wasn’t ready to give up yet.

I had slowly withdrawn from most of the people I knew, but fortunately a few friends wouldn’t let me slip away. One in particular helped me get back on track. He convinced me to join him on a ten-speed bike trip through northern Wisconsin and Michigan. The bike trip lasted seven weeks. It was an amazing experience. Each new day had to be negotiated. What did we want to see? Where did we want to eat? Should we find a campground, or did we want to stay in a motel? Everywhere we went people were interested in who we were and where we were heading. For the first time in a long time I had the sense that I was in control of where I was and what I did.

In many ways that bike trip never ended. My life opened up to possibilities I had thought unthinkable a short time before. Instead of the day-to-day decisions of the trip, I began to consider longer-range perspectives. I decided then that I would never again let circumstances dictate my course in life. And just what did I want out of life? I decided that I did still want to work with people. I resolved to finish my graduate degree in social work, and I did, earning almost straight A’s in the process. I was still not sure about how I would deal with future vision loss, but until that happened, I would do the best I knew how.

The job search came after I graduated. In the late 1970s it seemed that every social work position I applied for required a driver’s license, to say nothing of experience. I had no driver’s license, of course, and the internship and practicum experiences during graduate training were my only experience. But more than that, I really did not believe in myself. When I interviewed for a job, I did not project the kind of confidence employers expect of job applicants. I knew that I was visually impaired and would only become more so. I saw myself as damaged goods. If I was truthful, I would not have hired myself.

It is said that insanity is doing the same thing over and over again, expecting a different result. After two years of a fruitless job search, I enrolled in a graduate program of vocational rehabilitation counseling with a focus on vocational evaluation and work adjustment. This time I chose a field of study in a career that was less likely to require extensive driving. I was determined to graduate at the top of my class and did pretty well, getting nearly all A’s once again.

My vision continued to worsen, of course. In fact I knew I should have started using a white cane long before I did. The decision to begin using the cane was not easy. I did not look forward to explaining to everyone why I was using the cane when I was “not blind.” The day I started using the cane was the same day I started graduate school. My classmates and instructors did not know me from before and so acceptance was immediate. I still had to deal with my family and friends when I went home on weekends, but this was manageable. Before long everyone seemed comfortable with the new order of things.

I was using a magnifying glass to read regular print, but I started thinking about what I would need as a blind person, not a high partial with pretty good functional vision. I wanted to prepare for what was sure to come. My vocational rehabilitation counselor referred me for a week-long assessment at the Visually Impaired Program (VIP) at the technical college in Wausau, Wisconsin. From the start I said I wanted to prepare for blindness, and I wanted to know how I could engage in a professional career as a blind person.

To assess my cooking skills, I was given a TV dinner. I read the instructions on the box (without the magnifying glass), put it in a microwave, and set the controls. After removing the cooked meal from the microwave, I ate it. My skills in this area were deemed adequate for survival, and no training in compensatory skills was indicated. Braille was not recommended since I could read print with magnification if needed. For mobility I was taught to hold the cane diagonally in a fixed position across the front of my body. I was advised to travel at night only in well-lit areas or with assistance. Essentially the instructors at VIP believed that compensatory skills training would be a waste of time since I would only have to be retrained later when I experienced more vision loss. Needless to say an assessment like that was not only a huge disappointment, it was an abysmal waste of my time. It also made me think that there was not much I could do to prepare for the future until I actually lost more vision.

When I got my graduate degree in vocational rehabilitation counseling, nine years had passed since I had learned of my eventual blindness. It pleases me to say that I took the white cane with me to my first job interview after graduation. I got that job, and I worked there for nearly three years. Let me say that self-confidence goes a long way in a job interview. I knew that all sheltered workshops in the state of Minnesota had three years to become CARF (Commission on Accreditation of Rehabilitation Facilities) certified. I knew that the Achievement Center (TAC), where I interviewed, was not CARF certified. If TAC did not achieve standards acceptable to CARF, it would not receive state funding. This knowledge served me well in the interview. I said that I could help TAC get ready for CARF and that I knew what would be required. Later on I learned that I was the only applicant who knew anything about CARF, and that was why I was hired.

I did well at TAC; my graduate training was put to good use. Still vision loss continued inexorably. I went through a series of different devices with higher magnification and lighting. I thought I might prepare for encroaching blindness while still on the job. I became a client of the Minnesota Services for the Blind, and a mobility instructor came out to work with me using the white cane. She thought my method of holding the cane diagonally across my body was fine; that didn’t need to change. However, she thought impaired hearing created a safety problem. I have 50 percent bilateral hearing loss, and I was advised not to cross any busy streets, except intersections with traffic lights. She also recommended that I not travel unattended at night or in dark places. She thought I would do well to make more use of sighted guides. I listened to what she had to say; she was the expert after all.

The time for making decisions was not far off: visual ways of doing things were breaking down, and it was taking longer and longer for me to get things done. I asked my VR counselor what I should do since I didn’t believe visits by my O&M instructor would be enough. He told me about the Minneapolis Society for the Blind (MSB), and I sent away for more information. I also inquired about training programs in other states such as Lions World in Arkansas and a new program in Idaho. My VR counselor, however, did not encourage this exploration. If I pursued training anywhere outside the state, I would lose any assistance I might otherwise get. In other words, it was MSB or nothing.

I met the newly hired director of an independent living center for people with disabilities during this time of uncertainty and indecision. She was totally blind and the first positive role model I had met since being told that I would be blind myself. This was not because I avoided contact with blind people; in fact my VR counselor in Wisconsin knew I wanted to meet other blind people and arranged for me to meet some of her clients. There was the man who had lost all his vision in a plane crash three months before. He was very angry and believed life was over for him. The strength of his despair blew me away. Then there was the blind housewife. She also had RP and was totally blind. She had a woodshop in the basement of her home, and the tools she showed me for measuring were intriguing; however, she did very little outside the home. She gave effusive thanks for her husband, without whom she said she would be completely lost. These encounters did not encourage me, and I didn’t ask for any more introductions.

My new friend was a member of the National Federation of the Blind of Minnesota (NFBM). With her encouragement I attended an NFBM state convention in Minneapolis. The experience was stunning. More than a hundred blind people were at that convention engaged in all manner of endeavor. I heard the message that blindness was in fact manageable. If I wanted to continue my career in rehabilitation, there was no reason why I shouldn’t--provided I had the proper training and opportunity. I asked about MSB and heard very little positive about it.

As it turned out, my friend was once employed as the home management instructor at the Nebraska Orientation Center for the Blind in Lincoln. It sounded like just the sort of program I was looking for. My friend and I arranged for a tour, and I quickly concluded that this was where I needed to be. I told my VR counselor of my plans, and my case was closed. My resignation from TAC was bittersweet, but I knew it was time to move on. By the way, TAC earned CARF certification the month before I left.

The training at the Orientation Center for the Blind was without a doubt a life-changing event. After years of experience in the field, it is now possible for me to compare the Orientation Center with other training centers for the blind. Many training centers provide basic skill instruction in the alternative skills of blindness over a period of three months or so, but that is as far as it goes. If the purpose of training is simply to teach the basic alternatives needed for travel, communication, and activities of daily living, the case can be made that three months of training is enough. It is my contention, however, that many graduates of centers like this do not go on to complete vocational training or obtain high-quality employment. In fact many return for more training in the skills of blindness, particularly if they lose more vision.

Center training is successful if the trainee has gained the basic alternative skills of blindness, problem-solving skills adequate for managing situations faced by blind people every day, and a positive understanding of blindness and belief in oneself as a blind person. The approach to training is called “structured discovery.” Through exposure to a series of gradually more complex learning situations, trainees develop confidence in their ability to apply the alternative skills of blindness and come up with solutions. Seminars during center training provide frequent opportunities for trainees to examine their personal attitudes and beliefs about blindness. As skill levels rise, trainees often change their ideas about what is possible after center training.

To realize success, training is longer than it is at most other centers. It has to be. If alternative skills are to be applied with confidence in a way that promotes full participation in the life of our communities, more time is necessary. An intellectual understanding about what blind people can do is not enough; it needs to be experienced at a gut level; it needs to be lived.

I could go on about the value of each class I participated in during my center training, but I won’t. Suffice it to say that every class contributed significantly to my personal growth. I was finally getting what I needed in preparation for life as a totally blind person. At that time I was still what some people referred to as a “high partial.” As such, my training was completed under sleepshades. Sleepshades were never a problem for me. There were enough times when my diminishing vision simply did not work well, and nonvisual alternatives were the way to go. I could still read print with a magnifying glass, and I could still recognize faces, but I knew that wouldn’t be the case in another few years. As long as my vision worked for some things, I used visual strategies, but I didn’t want to repeat center training if my vision got worse, as I knew it would. Sleepshades made sense.

I quickly got with the program, as my fellow trainees would’ve said back then, and my progress was rapid. The ten months I spent in training in 1984-1985 were the most important time of my life. I owe the center a great deal, but center training was not the most important thing that happened to me then. The connections I made with other blind people, at the center and through the NFB-Nebraska local chapter, did more than anything else to help me realize my own potential and grow as a blind person.

Fourteen years had passed before I could connect with positive blind role models, something that should have happened when I first learned I was becoming blind. I can’t say enough about how important this was to me. In fact, even though I had been a client of two different state vocational rehabilitation agencies, my real rehabilitation as a blind person did not begin until I came to Nebraska and joined the society of other blind people, people who were not extraordinary or exceptionally advantaged, people I could relate to. The range of possibilities became much wider, and I came to feel more secure about myself and where I was going.

I want to say one other thing. During the years I struggled with blindness, my family and friends felt my pain, sometimes more than I did myself, or so it seemed. They wanted to help but didn’t know how. Since I hated the idea of being dependent on others, I resisted any of their attempts to do things for me. This created an awkward situation. Whenever I was clearly experiencing difficulty, no one knew exactly how to act. At other times I would begin some undertaking only to encounter expressions of disapproval or even fear. That was the situation I faced when my family learned of my plans to begin the bike trip mentioned above. They thought I would have an accident for sure, probably on the first day—never mind that I had been biking around town for years.

After center training I was much more relaxed around people—family, friends, or strangers. I conducted myself differently, and those who knew me appreciated the difference. I had more confidence, more self-assurance. Once my family realized that I was not an accident waiting to happen, they relaxed and became less nervous. My relations with friends also improved. Not everyone I thought of as friends stuck by me; some bailed out pretty quickly, and that hurt. Maybe that was for the best. The friends that hung in there, however, will be dear to me for as long as I live.

I didn’t really think about how my relationships with the people closest to me would change as a consequence of training. It was a benefit totally unexpected. In fact, I didn’t anticipate just how much training would change my view of the world and what it had to offer. It came as a pleasant surprise—and a revelation. What we do in life is up to us. That’s true. But we are social animals after all. My journey would not have been possible without the people I met along the way. I owe a lot to a lot of people.

I worked a temporary position as an outpatient social worker at a Veterans Administration Hospital in Wisconsin after my center training. That might have led eventually to a permanent job in the federal government, but then a position for a vocational rehabilitation counselor opened at the Nebraska Services for the Visually Impaired (now the Nebraska Commission for the Blind and Visually Impaired). That was twenty-five years ago. I am totally blind now, but that’s okay. I am comfortable with who I am and where I am. More important, I can now give back to others as others gave to me when I needed it most.